I haven’t shared my IF ONLY FOR ONE’s in awhile and two days in a row BAM! This story took Place Thursday May 7th 2015. I have to start with a little foreshadowing. I was getting ready for the day and I decided to wear a new top I purchased a few weeks ago. It is made of thin tshirt like material so poking sticking a pin through it would surely leave an obivous the next time I wear it. Out of habit I went to stick my lapel GRAY RIBBON and paused thinking well its a new shirt and hmmm what else could I wear for my gray today, my bracelet but you can’t see the ribbon . STOP! I said “SELF” its a shirt not a BRAIN TUMOR. It’s a tiny hole in a t-shirt replaceable not a massive slice in my head. No second guessing now and WHALA I put the ribbon in my shirt. ( seems trivial but stick with me)
Now to take on my day. I ran a bunch of errands and on my way home I stopped at a FEDX print store so I could make some copies of the GRAY MATTERS FOUNDATION poster “Wear your Gray in May” . I have my flash drive in hand and ask for help. A nice man named Bill walks me over to self serve and this is where it happened. We chatted for a bit with small talk. He has a PA accent. My husband is from PA so that opened the door for conversation. I ask what brought him to AZ and that is all it took. Next he walks me through the steps to get the file opened and on the screen. Once the first copy was made the BT conversation happens. I ask did he know it was BRAIN TUMOR AWARENESS month. NO. He reads the poster and it opened the door for even more questions. I share how I started this foundation and what I do and my passion for the cause because having experienced it first hand I KNOW! what it feels like to need that encouragement and support. Then it happens ……He gives me that look and Asks YOU???? Yes me I reply. He went on to say how lucky, blessed I am. And then the look that breaks my heart. That tone I have come to know way to often, that moment when I sense he knows more about brain tumors than he cared to EVER! He gives a BIG SIGH Really? and with the heart broken look went on to share because—-”my brother in law was diagnosed and died in less than a year” Before another word was said those horrible three letters entered our conversation. GBM ( in my mind DANG IT! ) I am so sorry Bill. He shared how tough it was to watch but how wonderful his sister in law handled it. We chatted a little bit more and I shared more about the special details of May and wearing gray. Oh my goodness it occurred to me Bill is my one today. I shared my business card with Bill and apologized I didn’t have a brochure but please keep take a poster. I offered for him to give his sister the card. I shared if she was open to it I would be happy to reach out to her . WAIT I was thinking & It hit me. I am wearing my special ribbon the one that is going to leave a small reminder . I only have one of these ribbons but that’s ok they need it. Today he & his sister are my ” if only for one”. I proceed to remove my GRAY RIBBON so I can gift it. I asked Bill ” would your sister wear a ribbon if she had one?” OF COURSE. Well give this to her. It’s a special ribbon because it has a little angel on it and it represents those who fought a good fight. I always tell my buddies I am a voice for those who no longer have one. She can wear this and be reminded he is not forgotten and someone is a voice for him in this cause. He will not be forgotten EVER. Bill said he just couldn’t take the ribbon. I shared with Bill I knew this was for his family because I almost didn’t wear it today and now he shares his story. It for sure is meant to be his sisters ribbon. You and your family are “my one” and I was supposed to give this ribbon to you. You just never know the reasons but follow those little nudges.
This story took place June 23rd 2015 the fourth Tuesday of the month. For those who have followed any portion of my journey you know that I have donated my time facilitating a local BRAIN TUMOR SUPPORT GROUP for over 10 years and that the 4th Tuesday is dedicated to this group. I typically schedule nothing all day and I get to the hospital rested and early to meet and greet the families both new and those who have attended for years. I like to be my authentic self. I want to be completely and whole heartedly in the moment so rested is best. Today was no different except for one little change. I have been trying to schedule a brief follow up appointment with a Corporate Brain Buddie and today they could meet me briefly before the group at the hospital. So I stepped out of my normal and scheduled a short meeting before I picked up the parking stickers etc. I had it all planned so I thought. An important piece to this story is each time I drive in town for group I always say a little prayer and ask that all who are supposed to be at group arrive safely. I ask that I have ears to hear those who need to be heard and eyes to see those that need to be seen. I ask to help me be all I was created to be. I want to be a good leader. I know without a doubt I was meant to help the hurting , the sick and yes sometimes dying. I was meant to encourage and share hope. For me I feel without prayer I would not be me. Well I got to the hospital and I text the person I was supposed to meet letting them know that I had arrived. The reply was “I have to cancel” AGAIN. Of course I had 2 choices get upset or live in the moment and be still. I choose the second. So I was quiet and figured well I am early and not in the heat , and not rushing decide to relax before my next stop. As I sat I people watched and then this one couple stood out. I saw this lady and man exiting the doctors office. The wife pushed the hubby in his chair to the side and she walked down the hall and came up and back a couple times. I asked if I could help her find something she said ”actually I am looking for water and there is a fountain but no cups.” Me- hold on I think they might have some in the Dr’s office. I went in the office and sure enough they did. I went one step further and filled it with water from a machine. I walked out and gave it to them. The man who I now know and call Mr. Bernie asked me my name ? ( HE OPENED THE DOOR for conversation and this is where it began,) He said I looked familiar. I asked if he had a brain tumor he said no but began to tell me why he was at the hospital and then our eyes met. He then asked what I do and I told him how I have survived BC and he said I was a true miracle. He told me how he is a retired Chaplain and some of his story about he and his wife. I told him I trained to be a volunteer chaplain after my first surgery and shared some of those stories and maybe that was our connection. His wife just couldn’t believe the connections and sat back and smiled. He looked up and said ” I was a Chaplain for many years in hospitals” Communication is vital and YOU HAVE THE GIFT, me- what do you mean? you know how to do it , You know how to communicate with those who need support , care. Your a good communicator. I scooted down so I could look at him and not over and he asked me Do you know the song “YOU ARE MY SUNSHINE” Me- Oh my goodness do I??? I told him he was going to make me cry I call my son that and my daughter my daughter shine. More importantly I just gave my son a wooden plaque for his birthday a few days ago he turned 26. The plaque said exactly that ” YOU ARE MY SUNSHINE” I shared how I wrote no matter how old you are you will always be my sunshine. Mr. Bernie said that he could tell I was SUNSHINE to those I meet . He asked if I knew the words? I said I believe I do. He said sing it with me. He looked at me and then his wife and with a big smile in the middle of the hospital tears flowing down my face I sang YOU ARE MY SUNSHINE with him. Here is the what I call the “GOD wink” I could have let the appointment that didn’t happen cause frustration and I would have left. I choose to be still. I choose to be in the moment not caught in disappointment , and in that moment I realized I never got stood up I was actually at my destined appointment. On that car ride in to my meeting I prayed and believed I would help all those I was supposed to. Well I DID! and in the process I was blessed before my group even started. Now here is the part that makes the smile even bigger. I chatted with them and walked them to the door to meet their ride. Mr. Bernie shared his father worked with Mr. Jimmie Davis who wrote the song YOU ARE MY SUNSHINE. Mr. Bernie’s father actually helped write the tune for the song. Mr. Bernie is due back for more surgery soon. I gave his wife my card and told them to call me so I could be his sunshine! I will decorate his room and the only gray that will be in there will be GRAY MATTERS! If we are still and in the moment we may just receive the sunshine we need. Today Mr. Bernie was my #ifonlyforone he was my #sunshine
#whatwedowednesday Part of our mission is to encourage those battling brain tumors. One way we do this is after surgery Lanette personally delivers a blanket. If you don’t live locally we put together a personalized box of goodies to create a smile and send your way. Look at a donation we received to help with achieving that goal. Thank you to the Lady’s Shawl Ministry at St. Patrick Catholic Community who donated 14 shawls & blankets. If you or your organization would like to donate items to fill our boxes of cheer please contact Lanette directly by phone or email Lanette@graymattersfoundation.org
Banking Bagels and now Brain tumors OHNO ! Gene Snyder was my client, my friend and now a brain buddie. I met Gene when I worked at a bank. We laugh now but it was not funny back then ,He scared me. What I mean is he had a very stern voice and said what he meant meant what he said but with conviction! He was a business owner and if we wanted his banking relationship he made it clear NO FEES on the business account or “byyye byyyyye”. I didn’t know it then but as time went on I learned Gene was a big teddy bear. I remember it like yesterday. Well the story goes we made Mr. Snyder happy and we did get his banking business. I worked at his branch for over a year but had the chance to move up in the company so I really only got to see him when I stopped by his deli “Generations” at 7th street and Missouri. Funny thing I was still the banker who received that occasional call when Gene expierenced an upset but I would do my best to help make it right. Gene was my client and a friend. It was when I was diagnosed with the brain tumor It proved even more so how every goodness was based on friendship and was very important to the Snyder family. I remember calling some of my clients to let them know I would be out on medical leave. Gene and his son Scott were top on my list. It would not be until after my surgery I would learn of the beautiful act of kindness, their generocity and love they shared with my family. You see I was in surgery and they delivered bagels and snacks so my family did not have to leave the hospital. To have a client bless me , my family, TOTAL GIFT from God! Gene made me promise to stop by occasionally. Of course honoring Gene’s request I kept them up to date with my health each time I had another surgery or treatment. I never dreamed I wouldn’t go back to work, I never imagined being told I had Brain Cancer for that matter. Gene would call periodically when one of his customers was diagnosed and asked if I could speak with them or if I could encourage them and of course I did. Through the years he sent clients and their familes that needed support my way. He believed in what I did and how I turned my situation around and to help others. Gene was just that type of guy He cared about everyone, he GENUINELY cared. It wasn’t until I got that call from Scott his son that our connection became even more clear. Scott called and was not himself in fact pretty upset. I could barley make out what he said. When I did hear I was devastated just like it was my own family. Not GENE! such a good man. ( PROOF BT DON’T DISCRIMINATE) The story evolves but I was able to give back. Who would have ever dreamed I would be sitting with the Snyder family in the very waiting room they delivered food to. Only this time I was sharing support with his family. GENERATIONS of the Snyders friends and family. I could write pages about how the family has become a second family but the fact remains you just never know what part of your journey is the building blocks for the next. This world is not the same without him. He will forever be deeply missed and NEVER EVER FORGOTTEN. Bagels Banking now Brain Tumors SERIOUSLY? It doesn’t make sense but I am just glad I was given the gift to know him. Today my story was about my friend Gene Snyder. A man who was Genuine!
Today is about My friend, my Brain buddie, Sheryl Shetsky AKA BT DIVA. She is a survivor of almost 30 years diagnosed with a CEREBELLUM BRAINSTEMGLIOMA in 1989. She tells her story best so here is her link and it is a must read. http://www.floridabraintumor.com/about.htm Our friendship began when my husband and I attended our first FBTA conference on our honeymoon weekend in January 2001. The FBTA event was exactly what we needed. The weekend was filled with breakout sessions loaded with great information and time to connect with others. We were so excited to learn we weren’t alone. It sounds crazy but this event taught us about this stuff called SUPPORT. We had no idea it was out there. I can remember my main take away listed in DIVA’s TOP TEN http://www.floridabraintumor.com/topten.htm my fave is BE PROACTIVE NOT REACTIVE. The association is more than connecting others, they have and continue to raise money for research. Diva has made a huge impact in the BT world. She has built coutless relationships in the community , medical , pharmecutical and much more. Sheryl get’s things done. Take a read FBTA donated 500, 000 to Pedicatric research the deets: UofF.htm I’m sure it seems I have painted a perfect picture but that is not the case. Hard work determination Sheryl has overcome ALOT! She presses on and makes that tumor pay its dues. Sheryl has taken a journey that for many is nothing but horrific. Diva has added connection and hope to a cause. Oh she knows plenty of heartache but is determined to to fund and find a cure. Our friendship: Sheryl is a true friend. It was her guidance and suggestions that have helped me succeed in starting Gray Matters Foundation. Attending her events opened the door for me to help so many that needed that personal encouragement and support. When I helped david m bailey with his cancer tours I became even closer friends with Diva. He performed annually at her events which meant I worked closely with her to make sure the performance details were successful. Through the years our friendship has only become stronger. We believe that strength is found in TRUST!, teamwork & collaboration. She believed in what I did and after I set up GMF non profit status she was one of the first in the BT community to offer us a booth so we could share what we do. Sheryl and I try to attend an event each year together so we can stay connected and current in the bt community. Fbta continues to be successful because of the foundation and leadership Sheryl has created. I am greatful to all Diva has given and continues to give. Please take the time to visit their website link above and like their FB https://www.facebook.com/floridabraintumor/?fref=ts
David M Bailey my friend, my brain buddie, and aka THE TYE DYE HIPPIE FOLK SINGER , THE HOPE DUDE I attached a link to his personal story if you haven’t taken the time to read you need to. DMB “My friend” I met him in 2000 at a NBTF event and after hearing him sing “ONE MORE DAY” I knew there was hope. I would go on to attend annual FBTA conferences each year and became better friends with a small group we called the BRAIN TUMOR BUS. The name was created because on the bus we were well. No sickness, no death only Life, wellness , happiness. The bus carried the cure. Each person had their place and job. Some say HA! FAIRYTALE and maybe so but for that time & place those LOVE THE TIME MOMENTS our BRAIN TUMOR BUS was the place we desired. If you didn’t know DMB I am sorry because you truly missed a huge blessing. The positive to such a deep sad loss , He left a gift for all, His legacy through his music. I had the privilege of helping David for a few years with booking his cancer gigs before the tumor reoccured. That time helping him taught me alot but blessed me so much more. I have always believed God puts me where he needs me and I know that it was right where I was supposed to be when things started to turn. I made david a promise and it was this: I would encourage his family. I would keep his legacy alive. Having spent time helping him this would be easy to do. I told him I won’t let people forget His life mattered! His family mattered. I promised not let his story be forgotten. HIS PAIN WOULD NOT BE IN VAIN http://ow.ly/pZbP300FV6Y
Today we want to tell you about Steve Westerhoff. Steve is a TWENTY EIGHT year survivor of Medulloblastoma. He was diagnosed in 1987 with a pediatric brain tumor while attending college. He explains that being told he had a brain tumor caused some life changes. Steve endured surgery and radiation down his spine. He and his family were given terrible statistics and on with life he went. He clearly beat the odds. Steve is a huge part of why the Local support group is here today. He works at the hospital and while working would cross paths of those on the same journey and invite them to participate in group. In the early days of the group when it was not funded by donors Steve organized the monthly potluck so attendees would have snacks and drinks. Steve didn’t stop there. He was very involved in different events in the valley involving BRAIN TUMOR AWARENESS. The tumor he was diagnosed with was typically a pediatric brain tumor so he was very passionate about helping peds and was involved for many years with the Local Pediatric Ride For Kids events. He was asked to speak at several of the events. If you have ever met Steve then you know he has a heart of gold. He encourages all those he meets. Steve has helped with GRAY MATTERS FOUNDATION on numerous occasions making sure others know we are here to support and encourage the families on their BT journey. He wears his turtle shirt with PRIDE and tells the world what he thinks Brain Tumors Stink. We can always count on him to help with #BTAM events. We appreciate Steve and with Brain Buddies like himmore families will feel cared for and supported. Thank you STEVE for all you do.
There are times in people’s lives when they hit the abyss. When things look so incredibly bleak and you feel that you will never dig yourself out. Last year I faced the abyss and Lanette, with her kindness and love and infectious spirit helped drag me out of the abyss, here is my story.
Team Gray Matters “without your brain it doesn’t matter” my first tag line and fundraising page for the 2005 NBTF walk. Hard to believe it has been over 10 years. The NBTF now NBTS ” AZ” Angel Adventure walk was originally formed with volunteers from Standard Insurance, their Manager Sue Swift, fellow Standard employees and myself. We worked with then NBTF to create a successful walk for Arizona. Take a minute to read my first fundraising page http://ow.ly/D4aS3009Gbz
I met a lady while volunteering on the Pediatric Ride for kids. This was over 10 years now. She called me and asked if I spoke to families with adults that had brain tumors. Funny, I worked more with families of adult victims than children at that time. I said of course and the story began. She asked if I would reach out to her hair dresser who was just diagnosed with a brain tumor. I of course again said yes got the details and go with me as I tell you about Jack. I remember calling and playing phone tag a few times and then finally connecting. We talked and he shared he was going to have surgery and was concerned about the outcome , his family and how his partner of over 20 years would cope. I did what I do best and that was try to reassure him that he would not be alone and I would stay in touch with his family and encourage them every step of the way. Unfortunately I did not get to meet Jack before his first surgery and after coming home he had a seizure and endured his journey with a GBM blind. I did get to meet him when he was in the hospital again. We tried to make the best of it and he had fun joking with me each time I entered the room because he said he could smell me. He said he smelled the cookie. ( I wear vanilla) I became what I consider pretty close to the family attending some holiday events and was invited to scrapbook parties his daughter in law hosted. We were brain buddies. Sadly like many of the GBM diagnosis his story took a tragic turn. I found that I became even closer to John his partner and still to this day keep in touch. It wouldn’t be until Jack’s parting that I would learn more about him through John. John at the celebrate life did something that I had never seen before. He had the standard photos sharing the history from childhood to present but he made it more personal having tables with tangibles. He had the things that friends would remember most about Jack. Jack had owned several salons through the years and had many clients. They knew him by the little things that gave him his unique character. The before tumor and after tumor things Jack did & liked. The cologne he was known for wearing, his favorite food, drink etc. He had his own paper it was custom made with his name on it. He had his favorite soap. He had the back scratcher that he would always ask you to use if you stopped by for a visit. His favorite candy. You were his best friend if you use the back scratcher and could reach the spot he needed scratched. He even had Jacks cell phone on the table. I am told Jack was ALWAYS tied to his phone. There was brushes and combs and even the very blow dryer he used with his clients. Many were shedding tears when they walked past and just held it close to them. I just kept thinking of all the services I had been to and how I never walked away knowing anyone like this. What a really cool rememberance. ( The items I mentioned were just a few there were more) It was this remembrance, those items set out to create vivid memories that would later start what I would call my JACK BASKETS. This was the idea that sparked my Gray Matters Basket events. What better way to remember and honor those than to describe them with items you can touch , smell , see. I did not know him pre tumor but John sure helped me through sharing Jacks legacy creating a visual. John shared an amazing life lived. Those who knew Jack had a visual rememberance of the good times not the beast that stole our friend. I could go on but today this is Jack, Forever Missed by Many and never forgotten because friends don’t end.
Today I want you to know about my friend Matthew Fullerton. He will celebrate 29 years surviving GBM. I think His tells his survival story best here is that link https://virtualtrials.com/survivematt.cfm I met Matthew at an event in 2000 but would not really become friends until attending the Florida Brain Tumor conferences EVERY YEAR from 2001 on. Matthew is the true definition of MEMORYMAKER . Matt took photo’s at all our events and if you didn’t realize it you would when you got to see his masterpieces aka his SCRAP BOOKS. He took the photos and created true memorymakingmoments that will last a lifetime. It was so awesome because he would create online photo books and would bring the hard copy photo albums at the next event for all of us to see. It was the best. Some people ask “Isn’t it sad to look at those books and see so many gone?” I say NOPE! just the opposite What a blessing to have those books to remember LIFE LIVED the good times. Matt always makes you laugh and listens when you need to cry but don’t be fooled he will tell you like it is ( ask any of those who spend a little time with him ). Watch out ! Mess with those he cares about , specifically his brain buddies and your TOAST!!!! I wanted you to know about Matt because in the midst of what could have taken him down he has used it to encourage many all over the world. To know Matthew is to love Matthew. I am so glad to call him my friend. & he says it best KEEP ON KEEPING ON